Lap found stage 4 endo

Hi ladies, just wanted some advise following my laparoscopy yesterday. So, quite shocking news really - I have stage 4 endo, stuck to my bowel and bladder and I'll need major op to remove it, as well as IVF for children as my tubes are screwed. My surgeon was flabbergasted that there was so much endo given my comparatively little pain. Also I had my tubes blown with dye less than 6 months ago and they were clear. Feeling very shocked and worried so would be grateful for anyone who has experienced similar x

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  • I've not experienced similar but I'd be happy to be here for you if you need support.

    Hope things start to get a little brighter for you soon hon x

  • Hi, I was told I had a cyst on my ovary, they drained it in January and let me know that my left ovary is attached to my bowel but I could still have children as my right one was clear. When I had my second lap in August I was told that everything was a mess, I knew it wasn't good from the scan the month before but when they operated the cyst was 14cm on my right side and 5cm on my left, both tubes are damaged and they were all in agreement that I couldn't have children (or ivf even if I wanted it). Very shocking to think in this short space of time I could no longer have children :-( fortunately I wasn't planning on another child but it is so scary how things can change so quickly. The person doing my scan couldn't understand how I had no pain when they did the scan - it was only the size of the cyst and the position near my stomach that caused the most discomfort in the end. I'm now on zoladex and feel loads better. I really feel for you and hope things go ok for you x

  • I know from what other ladies have posted, that the severity of endo you have isnt always equal to the pain you experience. I found out I have stage 4 similar to you, in February. I always had severely painful periods and the last few years started to have pain (aches and sharp stabs) a week either side of my period. I don't want kids, so Im sorry I can't help with that. The options I was given were hysterectomy (I read up a lot on this to find it doesnt always work), or long term Prostap injections (which put you in a temporary menopause, but also have a lot of side effects). I ended up asking for a referral to an Endo Specialis, rather than a general gyne - you may want to look into this, as well - NHS practice recommends referral of stage 4 endo patients, but it doesnt always happen if you don't push for it!

  • Hi Miguella. I too have stage 4, history of large ovarian endometriomas but am currently giving IVF a try. I have read some stories of success with IVF and stage 4, although it's not as easy to get success with stage 4 as it is with endo at stage 1 or 2. I see it as a gamble and to be honest I am not hopeful for myself but I am older and also have a low AMH but it's something I am willing to try. If I don't try I will never know. There are currently a few success stories with IVF and stag 4 endo on infertility network. If you need further information let me know.

    I understand the shock at the diagnosis, I remember being relieved that I had an explanation for my constant severe pain, was relieved it wasn't cancer (that really had crossed my mind), but as it sunk in I was pretty upset and just flabbergasted at the extent of damage.

    There are a few positives - at least you now have your diagnosis, and if you do have surgery - get it with a proper excision surgeon and if you are in the position to have IVF, it's best to start in within 6 months of surgery. I'd also recommend joining Endometropolis on Facebook, a support group for the medical side of endo - it is mainly American but there are alot of UK members. It can get a bit unnecessary bitchy at times, so I warn you of that, but you can ask advice on where to get good proper excision surgery (which is so important) and you can post photos of your surgery to get advice from the resident surgeon - so it has it's uses from a technical perspective.

  • Thank you @YellowRose, it sounds as if you are exactly in the same boat as me. Would it be ok to PM you as I have a few questions?

  • Hiya - yes please do PM me, np. I'll be out today but will reply

  • Hi sparklyt sorry to hear this.. I was told 2 years ago I have on my rectum and colon, I had op last year to remove endo from my ovaries etc but I refused the bowel op as was too scared, so I would also like to hear if anyone else has had the bowel op...

  • Hi,

    I was never told I am in stage IV of my endo I just went after I had menopause experience treatment and hormonal pill to let my GP know I either have kidney stones or it has returned with more 'friends'. I have experienced situations like waiting 6 weeks for a cheek and lost information or results, in the end I was offered a laparascopy in June which was performed at the end of October.

    My case was pain everyday, there was no before or after period. When it comes to period I did not knew when about I had it because I had months with no bleed for about 2-3 days and starting over. I had pain when it come to bladder and bowel on a daily basis. Constipation I was fighting for years no one told me is related to this. I went into surgery for a left hand side removal of endo and I woke up to find out I had one on my bladder and bowel and that I am actually full of them. I know have the injection treatment for menopause and not sure which pill treatment I am to start. My doctor is to see me in December to follow up. As I had previous treatments before when I was at the operation stage I have nothing to lose as I was all the time fatigue, fighting nausea, unable to eat, in pain everyday and put it this way not to positive thinking.

    I am 27 years old, not sure if I can have any kids, although I wish for... Yes it is shocking and worrying especially when you have done nothing to cause this and not sure what are paying for, at least this were and still are my thoughts, but then in my family both my grandmothers and a aunt had fibrosis in their 40, difference is that they all have their kids in their 20's.

    Recommendation, constantly take yourself away from negative thinking, input yourself and try everything to keep fighting and don't wit until you are to be drained of energy, recovery it takes longer.

    I hope this will not get you too upset but it is the truth of my experience and I wish I knew of this earlier as to be hones I will have demanded this surgery earlier. Now I go with the flow and I will see how and what will change.

    Take care.

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